Support and Resources for Individuals with ADEM
Transverse Myelitis Foundation (http://www.myelitis.org)
- Contact information: 1787 Sutter Parkway, Powell, OH 43065-8806; Tel: 614-766-1806; E-mail: email@example.com
- Founded in 1994, the Transverse Myelitis Association’s goal is to improve the quality of life of individuals diagnosed with rare neuroimmunologic disorders including ADEM.
- Convenes international symposia on rare neuroimmunologic disorders and funds a clinician-scientist fellowship
- Website includes information on the symptoms, diagnosis, treatment and prognosis of ADEM; a listing of clinical trials, a message forum, and physician network.
- Offers and provides information about support services such as a newsletter, family camp and support groups
National Organization for Rare Disorders (NORD) (http://www.rarediseases.org)
- Contact information: 55 Kenosia Avenue Danbury, CT 06810; Email: firstname.lastname@example.org; Tel: 203-744-0100; Fax: 203-798-2291; Voice mail: 800-999-NORD (6673).
- NORD provides information for patients and families, mentoring for patient organizations, advocacy for the rare disease community, research grants, and patient assistance programs.
NORD has compiled links and resources that may be useful to individuals and families affected by rare diseases: http://www.rarediseases.org/rare-disease-information/resources-tools
- NORD Rare Disease Database: This database provides reports in patient-friendly language on more than 1,200 rare diseases. Each report provides a basic introduction with links to resources for additional information and assistance.
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.
- The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on ADEM.
- PubMed is a searchable database of medical literature and lists journal articles that discuss acute disseminated encephalomyelitis. Click on the link to view a sample search on ADEM.
- Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge. Click on the link to read information on ADEM.
- Medscape Reference provides information on ADEM. Click on the link to view. You may need to register to view the medical textbook, but registration is free.
- NIH Office of Rare Diseases Research: http://rarediseases.info.nih.gov/GARD/Condition/8639/Acute_disseminated_encephalomyelitis.aspx- provides information about ADEM and links to resources.